Seclusion and Restraint: Legislative Update

Disability Scoop reports:

Rep. George Miller, D-Calif., reintroduced legislation Wednesday that would prohibit restraint or seclusion in most school situations. The bill would also mandate that parents be notified if the practices are used on their child and it would disallow restraint or seclusion from being included in a student’s individualized education program, or IEP.

As chairman of the House education committee last year, Miller championed the same bill and it won approval from the full House. But the issue never came before the Senate and ultimately died after a coalition of disability advocacy groups that was working to support the measure split over disagreements stemming from proposed changes to the legislation.

The introduction of the new bill Wednesday came the same day the disability advocacy group TASH issued a report detailing media coverage of over 50 incidents of restraint and seclusion that have occurred since last spring.

The fate of the legislation this year remains unclear, however, under the Republican controlled House. The issue has been contentious from the start, with some education groups saying the federal proposal could jeopardize school safety. (Read all of Disability Scoop’s coverage of restraint and seclusion >>)

Miller comes to the table with a bipartisan group of 17 co-sponsors. But the current education committee chair, Rep. John Kline, R-Minn., is not on board, making it unlikely that the bill will be considered soon.

The bill is HR 1381.

From a Miller press release:

Specifically the legislation would:

• Limit physical restraint and locked seclusion, allowing these interventions only when there is imminent danger of injury, and only when imposed by trained staff;
• Outlaw mechanical restraints, such as strapping kids to chairs, and prohibit restraints that restrict breathing;
• Require schools to notify parents after incidents when restraint or seclusion was used;
• Encourage states to provide support and training to better protect students and prevent the need for emergency behavioral interventions; and
• Increase transparency, oversight and enforcement tools to prevent future abuse.

For more information about the legislation and the GAO reports, click here.

The bill won praise from The Autism Society and COPAA

California Mandate Has an Important Sponsor

Sacramento's KXTV, Will Frampton reports:

Several pieces of legislation at the State Capitol could have an impact on how children with autism receive health care coverage.

Senate President Pro Tem Darrell Steinberg (D-Sacramento) is one of four law state lawmakers who have an autism-related bill circulating in this legislative session.

Steinberg has sponsored two bills relating to autism, one of which is Senate Bill 166. It would require health care providers to cover some early-intervention treatments for children with autism.

"On a case by case basis, some insurance companies are covering it, and some are not," said Steinberg.

He argued that early intervention and treatment for children with autism is more effective, and has greater long-term impacts, than treatment which begins at a later age.

"There's that old notion of investing a little bit now to save a lot of money later," said Steinberg. "I think that applies not only to government, but to healthcare companies as well."

Senator Steinberg is no newcomer to ASD issues.

See earlier posts on AB 171 (Beall) here, here, and here.

Autism, Minnesota, and The Matthew Effect

"Whoever has will be given more, and he will have an abundance. Whoever does not have, even what he has will be taken from him." (Matthew 3:12, NIV).

This passage from the New Testament sums up the experience of ASD people receiving government services, whether from schools (as Colin Ong-Dean documents) or from other agencies. Families with money, education, and connections can work the system to get more. Those without these resources -- even though their needs may be greater -- often get less.

Maura Lerner writes at The Minneapolis Star-Tribune:

Rep. Jim Abeler, R-Anoka, introduced legislation Wednesday calling on the commissioner of human services to review a policy that critics have called a double standard.

The Star Tribune reported earlier this week that the state Medicaid program has subsidized a costly and intensive autism treatment for some affluent families while denying it to low-income children in its managed-care plans.

The treatment, known as Applied Behavior Analysis, can cost up to $100,000 a year.

"We were told Medicaid doesn't pay [for it]," said Abeler, chair of the House Health and Human Services Finance Committee. "We need to do it equitably, either all or none."

The House voted Thursday to approve health legislation that includes Abeler's amendment, which calls on the state "to extend the same autism treatment benefits" to all children in Medicaid programs.

From the original story:

Two years ago, a single mother in the Twin Cities asked the state Medicaid program to pay for an intensive type of autism therapy for her 2-year-old son.

She was turned down. State officials said the treatment -- known as Applied Behavior Analysis, or ABA -- is "not now, and never has been,'' a covered service.

It turns out, though, that's not the whole story.

For years, Minnesota taxpayers have been subsidizing that same treatment, which can cost up to $100,000 a year, for middle-class and even wealthy families, including the children of lawyers and business executives

...

Since the 1990s, a number of Minnesota families have found a way to get ABA therapy at taxpayer expense, says Dr. Eric Larsson, one of the pioneers of ABA therapy in Minnesota and founder of the Lovaas Institute Midwest, an autism treatment center in Minneapolis.

From the start, he said, they were mostly families with the money and persistence to fight for what they wanted.

They would apply for Medicaid coverage for their children through a special disability program, specifically for families above the poverty level. To get in, the child must be certified as disabled, and parents are required to pay a sliding fee (up to 13.5 percent of income).

Initially, Larsson said, the state rejected most of their requests to pay for ABA therapy -- which can involve up to 40 hours a week of treatment. But on appeal, he said, "every family that could afford an attorney won."

Eventually, it became common knowledge within certain circles that Medicaid would pay for ABA under the billing code for "skills training."

In fact, said Dawson, state officials certified those programs and told them what billing codes to use. "They know they use the ABA method, and they routinely pay those bills."

Gingrich Foundation Recognizes Autism Society

A news release from the Gingrich Foundation:

WASHINGTON, D.C., April 6 (SEND2PRESS NEWSWIRE) — In honor of National Autism Awareness Month, the Gingrich Foundation has selected the Autism Society as Charity of the Month, recognizing the organization’s devotion to improving the lives of all individuals affected by autism spectrum disorders.

Approximately 1.5 million Americans live with autism, which has seen a 600 percent increase over the past two decades. Autism, a complex developmental disability that affects a person’s communication, socialization, and behavior, places a heavy burden on families, requiring extra time and special attention for the affected family member, in addition to what the Autism Society estimates to be $3.5 million to $5 million in cost to care for one child with autism over their lifetime.

As the nation’s leading grassroots autism organization, the Autism Society, founded in 1965, works to increase awareness and provide resources about autism spectrum disorders (ASD), as well as promote the dignity of all individuals on the spectrum. With 150 chapters across the United States, the Autism Society advocates for the best and most appropriate services for individuals and families.

“I would like to sincerely thank Newt and Callista Gingrich for supporting the Autism Society and honoring its accomplishments by naming it the Gingrich Foundation’s Charity of the Month, a move that carries particular significance during April, National Autism Awareness Month,” said Jeff Sell, Autism Society Vice President of Public Policy. “Autism is the fastest-growing developmental disability in the United States, and individuals affected by autism have great potential if they have access to the services and supports they need. By supporting the Autism Society, the Gingrich Foundation and its supporters are helping to change lives, and we thank them for their invaluable contribution.”

“The Autism Society has made remarkable advancements in increasing public awareness and supporting research to improve the lives of those affected with autism,” said Callista Gingrich, President of the Gingrich Foundation. “We are pleased to select the Autism Society as our Charity of the Month and encourage others to support their outstanding efforts.”

In recognition of National Autism Awareness Month, the Autism Society has extended its ongoing partnership with AMC Theaters to include a special 40-city screening tour of a new documentary on autism, entitled, Wretches & Jabberers.

The Gingrich Foundation is a domestic non-profit corporation founded by Callista and Newt Gingrich to support charitable purposes.

Donate to the Autism Society: secure2.convio.net/asa/site/Donation2?idb=0&df_id=1220&1220.donation=form1&JServSessionIdr004=25ess8qku3.app224a .

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Virginia Mandate Will Become Law

The Richmond Times-Dispatch reports:

Virginia may soon require health insurance coverage providers to cover certain treatment for autistic children ages 2 to 6.

The House of Delegates and state Senate approved four amendments McDonnell proposed to the autism bill, but rejected the fifth, and most contentious. It would have sunset the law if a court or federal law were to invalidate the $35,000 benefits cap.

Advocates say they have worked out an agreement with McDonnell that he will not veto the bill. In exchange, leading lawmakers in both chambers agreed to seek a legislative solution to address the cost impact on Virginia if future federal action deems the cap unenforceable.

Tacking the cap provision to the bill pleased business and insurance lobbies that strongly opposed the legislation, but angered parents of autistic children who said it put families in a precarious position because treatment could be yanked at any time.

The law would not apply to self-insured companies and would exempt small businesses with 50 or fewer employees. It would cover state employees.

McDonnell's amendments that survived include creating a licensure requirement for applied behavior analysts through the Board of Medicine; requiring prior authorization of services, including applied behavior analysis; and having an independent assessment of treatment plans.

Advocates of the bill, who have worked for years on finding an agreement, cheered the action.

"This has been an uphill battle for the advocates and the patrons, but the better instincts of the legislature eventually prevailed. Autism has consequences for all of us, and this is a response we can all support," said John W. Maloney, with the Virginia Autism Project.

WTVR in Richmond reports:

Treatment Study

Shari Roan writes at The Los Angeles Times:

Autism treatments range from medications to behavioral therapies to alternative medical practices. But too few treatments are backed by solid evidence, according to a series of studies released Monday in the journal Pediatrics.

The analyses, funded by the Agency for Healthcare Research and Quality, reviewed studies that were published between 2000 and May, 2010, on autism spectrum disorders. The studies were aimed at interventions for children 12 or younger.

For medications, researchers found poor evidence of benefit for most of the drugs used to treat autism symptoms. While antipsychotic medications help prevent hyperactive and repetitive behavior, they are fraught with serious side effects. There is little evidence that other medications, such as antidepressants and stimulants, are beneficial.

"Although many children with autism spectrum disorders are currently treated with medical interventions, strikingly little evidence exists to support clear benefit for most medications," the authors wrote.

A second paper focused on behavioral treatments for young children. Of 34 studies examined, evidence of effectiveness was seen for intensive interventions that focus on specific behaviors. These include the UCLA/Lovaas approach and the Early Start Denver Model.

Parent training may also be useful for younger children, the authors noted. "... particularly for improving social communication, language use, and, potentially, symptom severity and family functioning, but the current evidence base for such treatment remains insufficient."

The paper noted, however, that many behavioral treatment studies were flawed in some manner and there was not enough evidence to support any single approach as the most effective.

A third study reviewed evidence for the drug secretin, a neurotransmitter used to treat ulcers. It is sometimes prescribed to children with autism to help resolve stomach and digestive problems and improve behavior. However, the authors found strong evidence that secretin is not helpful to children with autism.

Some argue that the press coverage of the study has distorted its findings:

Politics, Policy, and the Virginia Bill

At RealClearPolitics, Sean Trende argues against Governor McDonnell's stand on the Virginia mandate bill:

First, it is bad politics. Autism now affects one in seventy boys in the United States. This means that, should Governor McDonnell or a Virginia legislator ever want to seek higher office, virtually every one of their potential constituents will know a family with a child on the autism spectrum. Many will have a child in their immediate family on the spectrum. In other words, this is no longer an obscure disorder that is highlighted only in award-winning 80s movies. It is mainstream today, and is of critical importance to the families affected by it. Any politician will have to explain to a lot of potential supporters why they would not support increasing the availability of treatment. This is the type of issue that can easily overcome party loyalty for voters.

Second, and quite frankly more importantly, it is bad policy. Children who do not receive ABA therapy don't disappear. They go to public schools, who struggle with them and end up spending large sums of money on personal aides and special education classrooms to live up to their obligations under the Individuals with Disabilities Act. Many, sadly, go on to institutions. "Investment" is all too often a catch word for "I just want to spend a ton of money," but in this instance it really is an investment that will ultimately pay off with lower tax bills, fewer social services demanded, and smaller government.

Parade Magazine Highlights Adults with Autism

Previous posts (see, for instance, 2/18/11 and 3/17/11 ) have dealt with the largely-neglected issue of autistic adults. Parade today raises the salience of the topic by profiling Dana Eisman, a 20-year-old ASD woman in Potomac, Maryland:

In the next 15 years, an estimated 500,000 autistic children like Dana will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. “We’re at the moment of truth to address the numbers of children aging into adulthood,” says autism activist Linda Walder Fiddle. “Their lives are hanging over a cliff, and we must not let them fall.”

It’s like a splash of cold water in your face,” says Robin Heyd of New Jersey, whose son Eric is 20. “You’re devastated twice: first, with the diagnosis; then, years later, when you realize that after all the interventions, you still have a kid with autism and you have to plan his future.”

That planning process—which begins during a child’s teenage years—is called “transition,” but many parents can’t tell what exactly they’re transitioning to. Only about 3,500 programs are available nationwide for autistic adults, compared with 14,400 for autistic kids. Some are little more than day care, while -vocational programs may consist of participants working for a company in isolation, doing piecework like shredding paper. “It’s not what we want for our kids,” says Jeff Sell, a vice president of the Autism Society and the father of autistic twins. “The situation in many places is sad, disheartening, and disgusting.”

Regional Center Reform

At The California Progress Report, attorney Raphael Metzger writes:

Last week the California Senate Committee on Human Services held a hearing on the Lanterman Act and the future of services for the disabled. Among those present were representatives from the leadership of some of the nonprofit organizations mis-conceptualized as “regional centers created by the Lanterman Act” to serve the disabled. The fact is that the Lanterman Act did not create any of the organizations we today call “regional centers”.

Regional centers are privately run nonprofit corporations created and existing pursuant to California law governing non-profit corporations. What Lanterman did do was to create a function called “regional center” and require that DDS work through private sector contractors to implement this function. Similarly, although they are not labeled as such, the individuals, nonprofit organizations, and for-profit businesses “vendorized” through regional centers to provide services to the disabled are, fundamentally, sub-contractors.

He proposes a number of reforms, including:

Implementation of the regional center function should be competitively procured by DDS. Competition helps to drive performance and fuels innovation. It is part of what makes the private sector effective, and by failing to compete these contracts the purpose of turning to the private sector is lost.

Eliminate the lack of transparency in regional center operations. Either the entities acting as regional centers need to be deemed quasi-governmental in nature so that they are subject to the California Public Records Act, or DDS should include clauses in its contracts with regional center implementing agencies requiring disclosure of internal documents as if they were subject to the Public Records Act.

DDS should incorporate advocacy clauses into its contracts with regional center implementing partners. DDS should specifically acknowledge in their contracts for regional center services that organizations awarded the contract are expected to advocate for the disabled and will not be penalized for being an advocate. Fealty to the intent and purposes of the Lanterman Act means that regional centers must be willing to advocate for consumers against school districts, insurance companies, vendors, and even DDS itself.

Focus on quality control by develop metrics to evaluate institutional performance. Best practices committees are an ineffective means of controlling quality and do far more harm than good to consumers. DDS’s focus should be on developing metrics with public input and quality control through data collection, publication of raw data for use by researchers, and thorough, macro level evaluation of contractor performance.

Tomblin Signs West Virginia Mandate

The Wheeling News-Register reports:

Autism Day was celebrated Saturday at Wheeling Jesuit University with an Autism Walk and the ceremonial signing of the Autism Insurance Bill by Acting Gov. Earl Ray Tomblin.

More than 200 walkers made five laps around the indoor track of the Alma Grace McDonough Center to bring awareness to autism. Following the walk, Tomblin addressed the walkers and used numerous pens to sign the document which he officially signed into law on Friday.

Kathy Shapell, executive director of the Augusta Levy Learning Center in Wheeling, which treats autistic children, said, "It's a great day in West Virginia. This will have a big impact.

"This (insurance bill) will help thousands of children get the help they need," she added.

In addition, she said 90 percent of children with autism who receive early intervention and treatment can be helped and 50 percent of those children will be able to become indistinguishable from their peers and not need services again.

In a column, Tomblin writes:

There is no greater gift to any family than to have their children healthy and happy. It’s the goal we all share as parents and grandparents. The First Lady and I feel this way about our son, and I know parents across our beautiful state feel the same way about their children. It is because of their love and commitment to ensuring that their children not only receive the best possible care but also receive the specialized care that they need that I am proud to I have signed HB 2693. This bill requires insurance companies to offer autism related insurance coverage for families.

Among the hundreds of pieces of legislation that passed and that I signed into law this year, this bill truly puts the needs of our young, vulnerable West Virginians first. With my signature, West Virginia is now the 25th state to require autism related services covered by insurance for qualifying families. This has been a long five-year journey in the making.

During the 2011 Legislative Session, I received several dozen letters from grandparents, aunts, uncles, and parents of children with autism. These letters tugged on my heart with statements such as:

“My two year old son is smart, funny, and the light of our lives. He can be a fully functioning member of society if he is given the therapy that he so desperately needs.”

“My son has been paying thousands of dollars for ABA therapy out of his pocket each year. This family is not rich but my grandson needs all the help he can get. Since he has been having this therapy, he can communicate, play with other children and is learning to read.”

“My son is a different person since starting ABA therapy. Although we can only afford to pay for six hours a week, these children need 40 hours a week. With your help in signing the bill, we can finally give him the therapy he needs to be able to function in our world.”

“We struggle every day financially, emotionally and physically trying to provide his much needed treatment because insurance companies are being allowed to discriminate against our child based on his disability.”

These are just some of the heartfelt letters I have read over the past few months. I feel these families’ pain and am happy to be a part of improving their lives. I want to thank all of the families who wrote to me and shared their touching, personal stories. I am so pleased to say that insurance coverage for autism related services is now a reality. It is my hope that this legislation will bring opportunities for a better life to our children with autism and their families who strive to provide the best lives for them each and every day.

World Autism Awareness Day

Today is World Autism Awareness Day. From President Obama's proclamation:

As our understanding of the autism spectrum grows, my Administration remains dedicated to supporting children and adults impacted by autism. Led by the Department of Health and Human Services, we have expanded investments in autism research, public health tracking, early detection, and services -- from early intervention for children to improved long-term services and support programs for adults. My Administration maintains a firm commitment to advance autism research and treatment, as well as promote education, employment, and equality for all individuals with autism, from early childhood through employment and community life. We will continue to work with the Congress, experts, and families to improve Federal and State programs that assist individuals with ASDs and their families and to bolster the impact and reach of community support and services. I encourage all Americans to visit www.HHS.gov/autism for more information and resources on ASDs.

On CNBC, Bob and Suzanne Wright discussed the observance:

Autism and Wandering

As a previous post noted, CDC is considering a medical diagnosis for wandering. At The Wall Street Journal, Shirley Wang reports on the ensuing debate:

But the potential recommendation is garnering controversy from some autism advocates. The Autistic Self Advocacy Network and others are petitioning against the CDC’s stance because say that medicalizing the behavior could lead to increased and unnecessary restraint or seclusion of these individuals.

“The intention here is good,” says Ari Ne’eman, president of the Autistic Self Advocacy Network. “You’ve got people here who have wandered off and maybe get injured or even died. But they [the CDC] haven’t really thought through the unintended consequences.”

Having wandering as a diagnostic code will allow researchers to better gather information and characterize the problem and addresses families’ difficulties getting reimbursement for certain services, such as tracking devices, for instance, according to the CDC’s Coleen Boyle, acting director of the National Center on Birth Defects and Developmental Disabilities.

Health Blog Bonus: If you really want to get into the weeds about the debate, check out this transcript from a recent meeting of the Interagency Autism Coordinating Meeting (the wandering discussion begins on p. 11).

Waiting in Nevada

KRNV in Reno reports:



AP reports:

Testifying before the Nevada Legislature on funding for autism services was a herculean effort Wednesday for Reno mother Sherrie Olson.

Her 2-year-old son A.J., wearing a Superman T-shirt, screamed and writhed in her arms. He tried to run out of the hearing room and ride the elevators up and down. He didn't speak or listen to the people around him.

It's just an ordinary day for a parent of a child with autism.

"It's the best feeling ever when you get hugs from him rather than just screaming," Olson said.

Nevada legislators Wednesday heard three bills that would rework the state's autism services and replenish funding at the same time federal money and state general funds are drying up.

Assemblywoman Melissa Woodbury, R-Las Vegas, co-sponsored AB315, which would create a single umbrella for the state's three existing autism assistance programs. AB316 would establish a standardized screening system that would allow the state to determine how many Nevadans have autism.

James Ohrenschall, D-Las Vegas, is co-sponsoring AB345, which would make a $1.5 million appropriation to fund autism programs. A budget committee would have to approve the extra money even if the bill passes the Assembly Health and Human Services Committee because the funding is not included in Gov. Brian Sandoval's proposed budget.

The three existing state funding streams support about 398 children, and at least 349 children are on the waiting list. If AB345 passes, all the children on the waiting list will receive services.